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A third-generation prostate cancer patient, the Chicago attorney was diagnosed with prostate cancer at a major Chicago teaching hospital in March 2010 at age 58. The biopsy revealed extremely low volume (a small part of one biopsy core) mostly Gleason 3, with a tiny amount of Gleason 4, yielding a Gleason score of 7 (3+4). The Gleason, for those of you unfamiliar with the system, is a grading system used to gauge the aggressiveness of prostate cancer.

Schraidt was opposed to immediate treatment and suggested to his urologist that they talk about it again in six months and see if the PSA had changed. But his urologist and separately his surgeon insisted that immediate treatment was absolutely necessary due to his age and the presence of Gleason 4. He was told that immediate radical treatment was necessary to avoid progression of the disease and possibly save his life.

Concerned about the reported sexual consequences of treatment, he read extensively, and asked his urologist and surgeon very specific questions, including questions about orgasm and erectile dysfunction. In response, he was told that orgasm could be expected to be normal, even in the absence of erections and that something could almost always be done about erections. His surgeon asserted that because of his age and overall health, he could expect an excellent recovery, and that he would find treatment and recovery to be a mere "speed bump" (presumably on the road of life).

The name of the hospital and the surgeon don't matter. Schraidt received standard care in 2010.

He trusted his surgeon. He took it as gospel that a prostatectomy was what was needed. He didn't seek a second opinion on either the biopsy pathology or the treatment recommendation.

Contrary to the reassurances he received from his urologist and surgeon, Schraidt had a far from easy recovery, for which he was totally unprepared. Looking back, he says, "I have struggled with treatment consequences, including, without limitation, apparently permanent ED, anorgasmia, leakage of urine during sexual activity, penile shrinkage, and low testosterone. I was not informed, was misinformed, or was outright lied to concerning these consequences."

Upset by sexual and psychological side effects from his surgery, Schraidt developed clinical depression that took him to the brink of suicide — all because of a supposedly life-saving procedure.

That same year, I was in a similar boat. Like Schraidt, I was diagnosed with prostate cancer. Unlike Schraidt, mine was low grade Gleason 6 (3+3). Nonetheless, it was enough for a community urologist to recommend that I have a prostatectomy immediately. Instead, I got a second opinion and opted for active surveillance (AS) — and have been thriving with it ever since. As it happens, I interviewed Schraidt's surgeon for an article and described what I was doing with AS. He told me I was crazy and ought to have my prostate out.

I didn't. Schraidt did.

My second urologist at the University of Chicago told me I was a poster boy for AS and showed me the research by Laurence Klotz, MD, in Toronto. Scott Eggener, MD, (the second urologist) told me he expected I would be the same, as far as my prostate cancer was concerned, in 10 years as I was then. I am eight years out now and, in fact, my PSA has improved and I have had no signs of any cancer at all in biopsies and mpMRIs (muliparametric magnetic resonance imaging).

I wasn't smarter than Schraidt. But I was luckier. There but for fortune ...

On the upside, Schraidt's surgery has so far apparently been a success in treating the cancer. But he questions whether it was necessary. His bout with depression required two years of medication and five years of individual psychotherapy along with ongoing participation in support groups. He now leads a full life with a mission — to help prostate cancer patients make informed choices. He facilitates a monthly support group in Chicago and serves as vice chair of Us TOO International, the major support and education organization for patients with prostate cancer and their partners.

But Schraidt remains upset over the way prostate cancer is treated and what most men still undergo without proper advice about the side effects of treatment. "Even after eight years, my anger and frustration with the way prostate cancer is treated and way treatment is promoted by the medical community is white hot," he says.

I met Schraidt by accident. As a result of a blog I posted on MedPage Today about how I was rebuffed as the first patient panelist at an ASCO symposium on genitourinary cancer, I met a group of other men on AS. We're organizing a meeting of world experts on prostate cancer in Iceland in October 2019; the group is called Active Surveillance Patients International. I ran across Schraidt because he maintains an email list of his Chicago support group participants, and I wanted to ask him to let his list members know about ASPI, because we're looking for volunteers. As a result, he told me his story.

I didn't anticipate his enthusiasm for ASPI's mission and his willingness to help us out. He has since joined the ASPI board.

Schraidt says, "One of the few things that helps me is working with others to change the treatment paradigm. Active surveillance is an important part of this, and I wish it could have been the path I chose."

He says he is looking out for the future of his 28-year-old son — as well as all of our sons.

Howard Woinsky is a Chicago-based medical writer. He has been on active surveillance for early-stage prostate cancer since 2010. He is the cofounder of ASPI (Active Surveillance Patients International), which is organizing the first international conference planned by and for patients on active surveillance for prostate cancer. The meeting will be held in October 2019 in Iceland. For more information, go to ASPIconference.org

Last Updated:6/10/2018

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